These last few weeks as well as being involved in ODs wedding, I have been thinking long and hard as to ‘where to from here’. Decisions have been made and discussed with the family.
On Wednesday I met with Dr H and told him of one of my decision. That I wanted to stop chemo. The peripheral neuropathy (nerve damage) was becoming debilitating and very painful. As I explained to someone it is like when you have had really cold hands – on the verge of frostbite when your circulation has stopped – and then as you warm your hands up and the circulation kicks in they become excruciatingly painful - that’s what my fingers feels like all the time.
He wasn’t that surprised and was supportive of my decision. As we had already discussed with the registrars the two visits prior, the neuropathy was going to be one of the deciding factors in whether I stayed on it. At most I was going to have 6 cycles, another 6 weeks as I’ve had 4 cycles already, of Taxol. He said he thought the Taxol had had some effect on the cancer as evidenced by my tumor markers dropping but he really didn’t think staying on it for another 6 weeks was really going to change the amount of control, and how that was going to play out in the long term. My tumour marker had fallen again to 174. He is hopeful that it will fall again in the next month or so while the chemo is still in my system. He agreed that now it is more about quality of life. As I said to SisM if he had tried to convince me to stay on the chemo I may have been swayed by his arguments as I trust his judgement a great deal where my treatment is concerned. The fact that he didn’t try and dissuade me at all reassures me that I am making the right decision, for me, at this time.
I know some people may view this decision as me giving up hope but it is not. It is me taking control of how I want to life the rest of my life. It is about me having some really good quality of life before the tumours grow and impact too much on my liver function. Being on Taxol has just made me feel tired and ‘crap’( slightly nauseous, off my food, and just generally blah) as well as the pain from my fingers all the time and I need to reclaim some normality. Although it will be a few weeks until the chemo is totally out of my system, I am starting to feel better already. I’m still tired but I don’t feel as ‘crap’ as I did. It’s about feeling up to doing activities with family and friends and enjoying my life a little more than I have been.
The other big decision I have made is that I will not go back to university next semester. As much as I love it I want to put my energy into some other things. With this last semester all my energy has been used up by Uni, and chemo, with very little left for anything else. Even though I have only been doing one paper the travelling time on the train, having to catch a 7.15am train in the mornings and spend an hour and a half travelling each way including bus and walk has worn me out. Hopefully with being off chemo and without Uni I will be able to prioritise some of the other things on my ‘to-do-list’ and get them done.
Depending on what happens – in the unlikely event my cancer stabilises, I can always revisit this decision later on. But for now, knowing that Taxol was the last chemo to try and that ‘Gertrude’ will probably eventually take over, I am going to get back to enjoying my life without it being ruled by chemo, blood tests and uni each week and be able to wake up in the morning and say what do I WANT to do today.
I might even have more time and energy to write blog posts and let you know what I am up to.